Ignominy and Fear: The Activist Nature of AIDS Commemoration
On paper, the fight against dangerous diseases and potential pandemics starts at the Centers for Disease Control in Atlanta, Georgia. Technically, that is what it did in 1981 when it identified the existence of the disease. However, for years after the discovery of acquired immunodeficiency syndrome, it did little to combat it. In fact, the CDC initially referred to HIV/AIDS as “4H disease” – referencing what the CDC believed at the time to be the four groups at risk of contracting it: Homosexuals, Hemophiliacs, Heroin users, and Haitians (Koenig et al.). Not only was this grouping based on incomplete information, it ostracized both the four communities mentioned and victims of HIV. The public saw these groups as subhuman and low-class – perhaps even alien from the suburbia where most Americans lived. This ultimately resulted in mainstream American culture pretending the problem did not exist whenever it could, and hysterically over-reacting when it could not. Even when the CDC requested funds for research into the disease, the National Institutes of Health refused (Boffey). The misinformed public and failure of the government to invest in an answer to HIV/AIDS led to the culture of AIDS activism.
By the year 1986, 11,932 people had died of AIDS in the United States (Abbott). However, the American government had only allocated 500 million dollars – a tiny fraction of the yearly budget – for research, treatment, and public education about the disease (Summers et al.). Little progress had been made in finding a reasonable cure for the disease. Likewise, the general public was terrified. AIDS victims were implicitly (or worse, overtly) condemned as immoral people who brought their condition upon themselves. Paradoxically, the public was also paranoid of contracting the disease. This is most visible from the treatment of students infected with the HIV virus. They were banned from schools across the the United States – parents driven by fear would go as far as picket to have such students removed from the classroom, ignorant of the HIV virus’s lack of capacity for airborne transmission (Mustich). Furthermore, funeral homes would either not accept the bodies of those whose lives were claimed by AIDS, or, in the case of one North Yorkshire cemetery – encased them in concrete. The lack of remembrance for AIDS victims, fueled by fear, was what triggered Cleve Jones, a San Francisco gay rights activist, to begin the AIDS Memorial Quilt.
The AIDS Memorial Quilt was conceived as a way to humanize the victims of AIDS. Before a 1985 protest, Jones asked his fellow activists to write the names of close friends and family who had been lost to the disease on placards which were then taped to the San Francisco Federal Building. Seeing that the placards resembled a patchwork quilt, he prepared for a larger, permanent memorial (The AIDS Memorial Quilt). This permanent memorial would consist of 3 foot by 6 foot panels, intended to represent the size of a human coffin. Eight of these panels would be stitched together to form a block, the units in which they would be stored. Every panel would represent a life lost to AIDS, and be decorated in a manner to represent them. In this way, Jones and his team intended to show the world that victims of AIDS were just as human as everyone else. In 1987, it was finally displayed on the National Mall, with 1,920 panels. It served as both a reminder of the lives silently lost to the epidemic, as well as an indictment of Washington for not doing more. Blair and Michel argue in their article “The AIDS Memorial Quilt and the Contemporary Culture of Public Commemoration,” published in Michigan State University’s journal Rhetoric and Public Affairs, that the Quilt is a culmination of the “democratization” of American memorial culture. They compare it to the Vietnam Veterans’ Memorial, which similarly lists the names of all those killed and missing due to the American intervention in Vietnam. However, there are stark contrasts between the memorials. The VVM makes no attempt to personify each name inscribed on its walls. The names serve to quantify the staggering costs of war. In contrast, the AIDS Memorial Quilt makes every attempt to portray every name as unique. A name in the former is a statistic, whilst a name in the latter, in conjunction with the surrounding material, qualifies a person. The reason for this difference is the stark divide between public perceptions of veterans and AIDS victims. The public needs only hear the word “veteran” to make a person worth remembering – in opposition, each and every victim of AIDS needed to demonstrate their value as humans in other ways. The Quilt was largely successful in humanizing AIDS victims and creating general awareness of the problem.
(the entire following paragraph seems off to me – it’s been bothering me for a while. I think it should probably be replaced with another detailing more exact instances of discrimination, etc.)
Not long after the AIDS Quilt was first displayed in Washington, D.C., the Centers for Disease Control finally released their first public service announcements on the disease, entitled “America Responds to AIDS.” However, similar to the earlier Helms Amendment banning the use of federal funds on materials that could be seen as promoting homosexual behavior, these were largely done in a manner which focused on scaring the reader away from behaviors which could result in infection, rather than actual education on the causes and effects of the disease. American government policy remained largely hostile: those who tested positive for the disease were banned from immigrating to the United States, and until the 1990 passage of the Americans with Disabilities Act, workplace discrimination against those with AIDS was legal. It is not until the mid-1990s that the government focuses on finding a viable treatment for the disease.
Koenig, S., Ivers, L., Pace, S., Destine, R., Leandre, F., Grandpierre, R., … Pape, J. (2010). Successes and challenges of HIV treatment programs in Haiti: aftermath of the earthquake. HIV Therapy, 4(2), 145–160. http://doi.org/10.2217/hiv.10.6
Abbott, F., (2016) ACT UP and the AIDS Crisis. Retrieved from the Digital Public Library of America, http://dp.la/primary-source-sets/act-up-and-the-aids-crisis
Summers, T., Kates, J. (2004) Trends in U.S. Government Funding for HIV/AIDS. https://kaiserfamilyfoundation.files.wordpress.com/2013/01/issue-brief-trends-in-u-s-government-funding-for-hiv-aids-fiscal-years-1981-to-2004.pdf
Mustich, E. (2011) A History of AIDS Hysteria. https://www.salon.com/2011/06/05/aids_hysteria/
The AIDS Memorial Quilt. Retrieved from http://www.aidsquilt.org/about/the-aids-memorial-quilt/
Boffey, P. (1987) Long-Running Debate on AIDS: How Well Did Americans Respond? https://www.nytimes.com/1987/10/13/science/long-running-debate-on-aids-how-well-did-americans-respond.html/
A Timeline of HIV and AIDS. https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline/
What are HIV and AIDS? https://www.hiv.gov/hiv-basics/overview/about-hiv-and-aids/what-are-hiv-and-aids/